Wait! There Is More Good News!

Well, we have officially started Tennyson on her new medicine - Leucovorin. We wanted to start it last Wednesday, but the medicine had to be special ordered and then compounded (turned into a liquid) since she will take it through her g-tube. We gave her the first dose last Friday evening and I am so excited to see what happens!

Her therapists shared in our joy when we told them the great news. They have invested so much time in Tennyson and it’s wonderful to see them share our excitement. She has wonderful therapists. We recorded some of her therapy sessions last week to evaluate her skills. This way we have a baseline to compare any progress she makes.

Here is some of the video so you can get an idea of her physical capabilities:

I think it is beneficial for you to see what she does now so you can see her progress when it happens.

It’s difficult for me to imagine Tennyson different than she is now. It’s hard to imagine her mobile and talking, but I am hopeful she will make progress. I’m excited to know more about my daughter – like her favorite color, toy, and food. I’m excited to hear her sweet voice. I’m excited to help her learn to use her body so she can move where she wants to go.

It seems the good news just keeps on coming! Yesterday we traveled to UNC in Chapel Hill for Tennyson to have a modified barium swallow study (also known as a video fluoroscopic swallow study). A swallow study is when a liquid (barium) is given by mouth to see if it is being swallowed properly or if it is going into her airway when she swallows. The barium shows up on a screen of what looks like a continuous x-ray. The entire anatomy of her mouth and throat can be seen, including where the barium goes when she swallows.

Ideally during a study, a child would sit still and swallow liquids of different consistencies, following commands to open their mouth and swallow when instructed. Tennyson didn’t get that memo.

Our swallow study went something like this:

As soon as we walked into the room, the whining began. Despite my attempts to fool her with my excited voice and saying “we are going to have fun!!!” she moved into hysterical crying. My promise of warm milk certainly didn’t change her mind. I sat her in the chair and she began “the silent cry” – you know, the one where their mouth is open and nothing is coming out because they are going to “SCREAM CRY” the next breath they take?  The bottle was prepared and I stood in front of her trying to coax her to take a few sips from the bottle.

{Recently, she enjoys drinking from her bottle because there hasn’t been pressure for her to drink large amounts now that she has a g-tube.}

After about 5 minutes of crying and attempts to help her wrap her lips around the bottle, I asked to give her a break to see if she would calm down and get down to business. We sang a few favorite songs and I was able to make the tears stop. She gave me a few giggles. I thought she was going to be okay, but as soon as I offered the bottle the tears flowed freely again.

Plan B was put into action. I had to pour the liquid into her mouth with a spoon while she cried and then wait for her to choke it down between gasps of air. {Sounds fun, huh?} I poured about 4 spoonfuls into her mouth and the torture was over – for both of us. Thank God.  She was sweating from crying. I was sweating from trying to stop her from crying. We were pretty exhausted by that point.

Tennyson has never passed a swallow study in her life – UNTIL YESTERDAY! Even through the hysterical crying, she managed to protect her airway when she swallowed the thin liquid. I guess the results made it all worth it. No liquid went into her airway when she swallowed. It’s exciting to know that she is protecting her airway and we can move forward with feeding therapy knowing she is safe. This was scheduled as a follow up from her laryngeal cleft repair last May. It can take anywhere from 3-6 months to see optimal results from the repair. Looks like it worked! On a side note, Tenn still has reflux, but the swallow study shows that she is not aspirating liquids into her lungs.

Amy

e-mail me at tennsense@gmail.com with feedback or questions.